Legislative Fly-In

“I am somewhat familiar—I have Hashimoto’s!”

This was the Legislative Aide’s response to me when I inquired if she was familiar with autoimmune disease.

In that moment, I thought—partly, we’d already succeeded.

But, having advocated for a sundry of issues since 2018, and first-hand experience as a staffer—supporting health policy for Florida District 9—I knew to maintain reticence. Even now, with an in-office ally, directly connected to the issues—especially during an election year.

It would take—as it always does—a multimodal approach to secure co-sponsorship from the Congressman the staffer worked for. From press releases, interviews, letters to the editor, proclamations, landmark light-ups, and fly-ins. Just like this one. Where I along with 49 of my autoimmune disease(d) colleagues, decided to overcome the limitations of our condition and March on Washington.

The Autoimmune Association, founded by Virginia T. Ladd in 1991 under the surname, American Autoimmune Related Disease Association, provided this opportunity to reflect on anecdotes of my lived experience with a condition that has no cure. And share those stories to Congressional staffers.

The structure of this fly-in was congruent to many others I have participated in as both a pharmacists and a patient. We arrived at DCA National Airport before 3:00 PM, to ensure ample time to attend the advocate mixer that evening at the Mayflower Hotel.

The following day, we would awake, just as the sun began to dance across the cherry blossom petals that lined the Tidal Basin. Excited to share our stories of resilience and courage and anchor offices to the need for common sense legislation and appropriations funding to close access and innovation gaps for millions of Americans.

And we did just that!

Structural Misalignment

Fatigue, joint pain, digestive issues, skin problems, muscle aches, fever, and brain fog are among the most common autoimmune disease symptoms impacting approximately 50 million Americans.

And with only $0.03 of every NIH dollar applied to research to discovering effective treatment and cures for challenging diseases like Hashimoto’s and Systemic Sclerosis with Interstitial Lung Disease there exist a chasm that decouples our goal of making America healthy and the resources necessary to do so.

Which reiterates the need for federal and state Hill Days and Fly-ins that connect autoimmune disease patients with those in charge of assigning health-related decisions into law.

The Ask

“I’m from little Elm Texas, zip 75068.”

This is the most powerful tool in my advocacy armamentarium. An introduction steeped in constituency. Posturing the conversation as an in-district voter rather than a visitor providing a leave-behind.

This approach maintains my poise and organization as I connect the dots of my experience with the bills I aimed to discuss:

First, The Safe Step Act (S. 2903/H.R. 5509); to improve step therapy protocols and ensure patients can safely and efficiently access the best treatment for them.

Next, The Help Copays Act (S. 864/H.R. 6423); to reduce patient OOP expenses by requiring insurance plans to include copay assistance towards patient cost-sharing obligations.

Then, The 340B Access Act (H.R. 5256); to ensure 340B is a true safety net program for indigent and underserved patients.

Finally, expansion of the Autoimmune Disease Analysis Platform Testing Space (ADAPTS); to scale efforts to collect, manage, integrate, and analyze substantial amounts of autoimmune disease data.

I use my life as a case study in what these bills support. Visual depictions using 11”x17” photos taped, to oversized popsicle sticks helps me to bring life to my experience in the eyes of the staffer.

I show myself completing a 6-minute walking test, sitting inside a glass body box, at occupational therapy, and standing before a pile of monoclonal antibody boxes that cost me $5 annually—because of copay assistance. All images that illustrate the time-consuming demands of managing an autoimmune disease that affects my lungs, skin, and hands.

And why these bills before Congress matter to people like me.

Ongoing Effort

Living with an autoimmune disease is challenging. And makes it difficult to find the inner capacity and motivation to engage in advocacy.

However, the challenges of uncertainty we face brood a level of resilience and urgency that extends beyond any single conversation on the Hill.

Whether that looks like traveling to Washington, writing from home, or simply sharing a story within our communities—every gesture of participation adds weight to a conversation that needs all of our effort.

And I can confidently share that there are organizations willing to support and offices willing to listen.

And fellow members of the autoimmune disease community excited, “for you to join the party.”